Transition from MDS to AML- What to expect?

[Lisa Grande]

Hi- My MIL was diagnosed with MDS in March timeframe. She was doing transfusions for blood and platelets every 2 weeks. Then it changed to every week and now we are every 2-3 days. She had a transfusion last Friday night (6 days ago) but when she got home, she started dry heaving. We determined they did not give her Benadryl prior to the transfusion but not sure if that was the cause. Then on Sunday (2 days later) she started running a fever and went back to the hospital. They told us that she does have a UTI but they did give her more blood. Last night (Wednesday) we heard that it may have progressed to AML and that the infection she has may be in her blood. She is still in the hospital getting antibiotics. Still has a fever. When we spoke of hospice a while back she was not ready to stop transfusions and if you go into hospice they won’t do anymore. Now we are where we are at. I don’t know what to expect. Can she beat this infection while she is in current state of likely AML? If she does beat the infection I read there is no treatment for the secondary AML. I guess the question is, if she beats the infection and comes back home but with the AML, will transfusions still work and allow her some days of comfort? Or with AML, will transfusions no longer work (albeit they only worked for a several days before needing another)? How long can someone live with secondary AML with no treatment? Thank you all for your help. This page has been very helpful to me and how I counsel my husband who is devastated that he is losing his Mom. And I will add, the strength of her caregivers during all this has been amazing but it is SO HARD. This is a horrible disease.

[Cliff Potenza]

I was in the same situation as your MIL in April/May of last year having been on Vidaza for my MDS for over 3 years. The drug failed and combinations of other drugs failed as well, I was getting transfusions and platelets quite often. I transitioned to AML I was 72 y/o at the time. My Dr. at the Moffitt Cancer center in Tampa FL recommended me for a Bane Marrow Transplant. I started the process of a BMT last August with very aggressive Chemo(often not tolerated by someone over 64 y/o) to put me in remission, followed by a second round of Chemo a month later followed by more Chemo and my BMT in November. It is now 10 months, I feel good, no sign of AML. I would find a “Center of Excellence” near you and get an opinion form them before moving ahead.

[Lisa Grande]

Thank you Cliff and so wonderful to hear you are doing well. My MIL has a host of other problems and is 83. She has been bed ridden since before the MDS diagnosis. BUT, I like hearing that your Dr. recommended chemo and BMT. We will make sure she gets the best recommendation possible. She is in Boston and at MASS General.

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